The first best year

Hello my darlings. For those who only read my blog and don’t have me on Facebook, I hope you don’t mind, I am just going to copy and paste here my Facebook status from yesterday, which explains the test result outcome and where I go next:

“OK, a bit more detail, sorry if it is too technical for those lucky enough not to have ever resided in cancer land. The four small tumours on my left hand side of my liver (including the pesky bastard that cost me the liver resection) are not currently able to be seen on CT scan. On the right hand side, which contains the two big tumours, they look unchanged on the surface, but a CT scan can only see the surface and these burrow very deep into my liver, so the oncologist suspects that they have melted away underneath and that in three months we can reasonably expect to see shrinkage on the surface area at next scan. Lungs are exactly the same, all under the centimetre they needed to be for me to get an appointment with the radiation oncologist. By far the biggest indication of whether SIRT is successful or not though is cancer markers in the blood. There are two types, one is just general cancer, the CEA. In December my CEA was 424, today it is 108. There is also a bowel cancer specific marker, the CA19.9. I can’t remember the specific numbers that he said for that one, but it was also in the 400’s in December and has dropped more than 50%. The SIRT has got a few more months of work left in it, and the oncologist said we can “reasonably expect these to drop further”. There is a referral going in to The Alfred this afternoon requesting the radiation oncologist to see me, and my oncologist expects that he will agree to see me, though there is no guarantee that he will agree to treat me at this point, seeing him is significant. He does a specific type of radiation called SBRT therapy on the lungs, it is very targeted, and by the bit of reading that I have done, his 3 year survival rate for those he has treated with primary lung cancer is 60%. I of course have liver cancer too, but this is pretty impressive technology if he will treat me. Now I just have to wait for an appointment, but my oncologist thinks it will be in the next few weeks. I don’t need to have another scan for three months, and he has dropped my appointments with him from fortnightly to monthly, as in his words we are “right on track”. Unless some weird and unexpected turnaround happens, I don’t have to worry about anything for THREE MONTHS. And in three months I can reasonably expect the results of the scan to be BETTER, not worse. I am going to have a bloody fantastic three months, you mark my words, somebody TRY AND STOP ME!!! Best place i have been in clinically with this cancer in a very long time.”

So, there you have it.

VERY.EPIC.DAY.

I woke up this morning and wondered if it was real. I never expected to be in this place again, a place where there was actually real hope of more time. There is no guarantee I will get this treatment, I have to meet with the radiation doctor and work through all the details. But let’s say it works out the way I want it to. SIRT has worked, and it can control liver tumours for YEARS. As for this SBRT lung treatment that I am hoping to have, it can control lung tumours for YEARS (or eliminate them). There is no doubt about the efficacy of the treatment. Chemo is still working to keep everything under control. You know what it means, don’t you?

JULES COULD LIVE FOR YEARS. YEARS!

A lot of doctors talk nowadays about how in some people, stage 4 cancer can be controlled for many years, and treated somewhat like a chronic illness. Sadly, for a majority of people that is not the case, I have had beautiful friends die over the last two years, who fought so hard, who tried EVERYTHING and literally couldn’t take a trick, nothing worked for them. To that end, I have been very lucky with my cancer so far. I have responded, and quite dramatically to every treatment I have so far been given. Even when we very scarily started losing ground mid last year, when I took a chemo break to go to QLD and everything started growing merrily the minute I was off the poison pump it seemed. It was the most scared I have been, I was in decline, I was in pain, I was exhausted and I doubted I would make Christmas. But, I came home, my oncologist changed my chemo drugs, and within a couple of cycles, I was back on track. Nothing shrinking, but some control, for a little while at least, I was going to get Christmas.

We sufferers of stage 4 cancer talk a lot about gaining time, precious time needed for the next.big.thing to come along. We talk about how they are developing new drugs all the time, and maybe they might be on time for us. We talk about whizz bang new treatments that might become a reality so we can punch out another few months or a year. I imagine sometimes people thing we are deluding ourselves, and realistically, for most of us who are already stage 4, there is not going to be a cure in our life time. But the hanging in there for the next time adder, this just goes to show how important it is.

When I was diagnosed, my oncologist talked to me about joining a SIRT trial. It was given in conjunction with chemo, and it was having really good results. But if I started any sort of treatment before signing to the trail I would be ineligable, so I had to make the decision right then and there. I wanted to hang onto the faint hope of a cure with the liver resection, so I had to let it go. After my veins and arteries were interfered with to try to get ready for the liver resection, that basically excluded me from SIRT and I was told chemo for life was all I had. And so, I just took the poison, knowing that I was waiting for the day that it would stop working and my oncologist would sadly shake his head, hand me over to palliative care and send me home to die. I’m sure you can imagine that this has not been an easy way to live.

Fast forward to the end of November, and my oncologist stuns me by saying hey, we are pretty much in control of this thing still, how about we try and get you a package deal of SIRT and, if it works, lung radiation. Don’t get your hopes up, he said, there are a million hoops to jump through first and you would have to be really lucky.

Here I am at the beginning of February REALLY LUCKY.

For the first time in a long time when it comes to this cancer I feel like we have kind of got the upper hand with it, like we are in control at the moment and not it. Unless something really weird happens, I am in no imminent danger of dying, in fact, I will likely improve further.

I woke up this morning with a feeling that I had emerged from the shadow of death. Unless there is another NEXT BIG THING after all this stops working, I know death will come for me far sooner than I had ever hoped, but it’s not coming for me now.

So, this is what I am going to do. I’m going to keep taking the poison because it’s keeping me alive for these treatments. I am going to hope like hell that I get the SBRT. And I am going to live the absolute FUCK out of life. You know that My Kitchen Rules bed party the other night? That was a party just because. There are going to be a lot more parties just because. I won’t let any chance to have fun pass me by. We will pack up the funbus and take the children for more holidays. In the summer and in the winter, because, hello COATS. Snowballs. FUN! I’m not going to miss a chance to learn, to grow, to love, to laugh. And when my time comes, whenever that is, I am going to be able to say I REALLY lived.

I am so happy for you!!! I am just having a break in chemo to go to Queensland lol. Last break i had meant the tumours went wild. Hoping this one will not result is massive progression. Every time one of us gets a good report or encouraging outcomes the rest of us celebrate because it brings hope across the board. I rejoice with you because i am too familiar with that shadow of death lurking in the wings, but also familiar with the joy brought through hope and a reprieve from the inevitable. Watching you gain hope and precious time encourages all of us. I pray that not only is that time greatly blessed for you but is also greatly extended way beyond your wildest dreams xxx

Quote ” I am going to live the absolute FUCK out of life” Love this!
I hate that Stage 4 is just so fucked up. Too many bloody good people I love having to worry (including myself). About the next few months, year/s etc. You are truly amazing chick. Love your new hair too. Only you could completely rock candy apple red.

Such great news, for all of you. Enjoy every minute of every day, of every year. Who knows when or where we are heading, but with positivity in our hearts and minds we can live and love. Stay strong, positive and healthy.